A devoted mum has revealed her shock after finding out her “perfect” baby has a mysterious brain disorder – with doctors unsure of how long she has left to live.
Sophie Giblin, 25, and her partner Jezz Bateson, 26, were over the moon when they welcomed their first daughter Alayna into the world on March 3.
She was the born fit and healthy, according to her devoted mother, but on March 17, Miss Giblin was left perplexed when her daughter turned a “funny colour”.
The first warning signs
She said: “She went a blue, grey colour. She was very unsettled the night before but she didn’t stop feeding and everything was still normal with her.
“I didn’t really know what to say to the doctors when I took her in but they advised me to take her to hospital and we went straight to A&E.
“Her temperatures and levels were fine but when they checked her oxygen it was very low so she was rushed straight through to resus and she hasn’t come off oxygen since.”
Doctors discovered she had white matter brain disease, which is where the tissue in the largest part of the brain wears away. However, medical experts cannot come up with an exact medical diagnosis to explain Alayna’s condition.
Miss Giblin, who lives in Withernsea, said: “She has got white matter brain disease but that opens up lots of different things and we don’t know to what extent she has it.
“She has had MRI scans which have come back as clear and they just can’t figure out what is wrong with her.”
Determined to stay positive
After staying in Hull Royal Infirmary for four weeks, Alayna was transferred to Leeds General Infirmary where she remains to this day.
Further tests have revealed the tot has hypotonia, which affects her muscle tone and is sometimes known as “floppy baby syndrome,” and dystonia, which causes muscle spasms and contractions.
Her brain has not developed since birth and all doctors can say for definite is that she is suffering from a severe life-limiting brain condition.
The family are currently receiving palliative care, which is traditionally given when a person is nearing the end of their life. However, Miss Giblin says the family are staying positive for the sake of Alayna.
“It has been horrendous for us,” she said. “We are quite a strong couple and we have got through it together but it has been really hard.
“We are taking every day as it comes and we go through good days and bad days. She is being fed by a gastronomy tube inserted into her stomach and she has to go to bed attached to a ventilator to breathe.
“There is no cure for whatever disease she has so it’s just about managing her symptoms and giving her the best quality of life we can.”
‘We’ve been amazed by the support’
The couple are hoping to take Alayna back to their home so she can be permanently reunited with her brothers Harry, five, and George, two.
The parents have had to split their time between caring for the boys and going to Leeds to stay with Alayna and it has not been cheap to travel to and from hospital.
However, people in Withernsea have stepped up during the family’s hour of need by donating in their masses to help out with transport costs and to give Alayna the best possible life.
‘Amazing support has blown us away’
So far, an incredible £1,790 has been raised by 70 people on a crowdfunding page ahead of a sponsored walk on August 25 starting at 10am at Withernsea Golf Club.
Miss Giblin said the family have been blown away by the support which they never expected in their wildest dreams.
“It has been unbelievable,” she said. “It is costing us £40 a time and if we do it together it is double that. It is ridiculously expensive for us and I’m trying to sort out my benefits because I can’t work.
“We didn’t realise just how much of a great community we live in and it has just been absolutely amazing.”
‘Don’t leave your child’s health to chance’
Miss Giblin also wants to warn other parents about the dangers of not taking their children for check-ups.
She was not overly concerned about Alayna’s symptoms but was left shocked and devastated when the true severity of her daughter’s suffering was unearthed.
“Because of the way she was we took her into hospital and even it is the slightest thing it is worth doing to see if your baby is OK,” she said.
“There are probably a lot of people in the same situation where they don’t know what is wrong with their child but you have to stay positive and work through it as a family.
“The hospital and the nurses have been incredible and we are just appreciating every day we get to spend as a family with Alayna.”
You can donate to the fundraising page for Alayna and her family by clicking here.